Thursday, September 22, 2016

Clinton Puts Focus On 56 Million 'Invisible' Voters With Disabilities


"This is starting to indicate that we are being taken seriously as a large population, as a group of voters who can legitimately contribute to the outcome of the election," says Ladau.

... One in five Americans has a disability. Add in their loved ones, and, advocates argue, this is a potentially powerful voting bloc. 

Friday, September 16, 2016

Myalgic Encephalomyelitis - National Organization for Rare Diseases

 studies suggest that in individuals with ME the viruses can trigger cascading events in the central nervous system through chronic activation of the immune system which, in turn, can result in widespread (diffuse) neurological dysfunction, changes at the cellular level, and nerve cell injury and death. Even when not actively replicating, an infection can lead to profound dysregulation of the immune response, causing neuroinflammation which destabilizes overall brain function, and producing symptoms with widely fluctuating severity levels Viruses also do not continually replicate, but do so at times of immune vulnerability, such as at times of physical or psychological stress. Unfortunately, viruses go latent, then they reactivate, and repeat this patterns, and once in your cells, any elevation of cortisol levels can cause the reactivation.

Wednesday, September 7, 2016

How anti-social-media sentiment hurts the disabled

Naomi Chainey shares her experience with chronic fatigue syndrome and
how social media is connecting those living with disabilities like
never before.
Those who take their potential to interact with the world for granted (the default able-bodied audience) are less likely to interpret Kuczynski's periscope as a lifeline. In actuality, Kuczynski seems to be depicting social media as a barrier to true participation.
... As fellow ME/CFSer Samantha Whitehead put it "Facebook has been such a lifeline for me. Not only because disability has curtailed my socialising, but also because I was able to maintain friendships despite being physically and socially isolated by an abusive partner."
* * *
These days, most of my good friends are from various ME/CFS support groups.  If I mention among able-bodied people that I managed to feed the cats AND myself breakfast before going back to bed, there are comments about being lazy.  In support groups, people understand what an accomplishment that is.  They recognize that there were times when I barely got the cats fed before collapsing.  I get cheers for doing as much as I do, rather than lectures because I'm not doing more.


Monday, August 29, 2016

Metabolic features of chronic fatigue syndrome

We targeted 612 metabolites in plasma from 63 biochemical pathways by hydrophilic interaction liquid chromatography, electrospray ionization, and tandem mass spectrometry in a single-injection method. Patients with CFS showed abnormalities in 20 metabolic pathways. Eighty percent of the diagnostic metabolites were decreased, consistent with a hypometabolic syndrome. ...
 Our data show that despite the heterogeneity of factors leading to CFS, the cellular metabolic response in patients was homogeneous, statistically robust, and chemically similar to the evolutionarily conserved persistence response to environmental stress known as dauer.

Monday, August 22, 2016

Becoming Disabled - The New York Times


This is the first essay in a weekly series by and about people living with disabilities.

Friday, August 19, 2016

Laura Hillenbrand: Leaving frailty behind

Author Laura Hillenbrand: Leaving frailty behind
Paul Costello on August 17, 2016

Laura Hillenbrand speaks like she writes: beautifully. She captures
moments like getting on a horse to ride again in ways that make you
feel like you, too, are riding and feeling the wind in your face.

Hillenbrand, one of the most successful writers of modern times, has
suffered many years from chronic fatigue syndrome or, as she likes to
refer to it, myalgic encephalomyelitis syndrome. (She despises the
term CFS, as she thinks it portrays those who suffer from it as lazy
and contemptible.) Astonishingly, she wrote two great books while
enduring vertigo and extreme exhaustion from her illness. Seabiscuit
and Unbroken captured the imagination of readers and there are more
than 13 million copies in print. Seabiscuit is the story of a
racehorse that captured America's heart during the Great Depression
while Unbroken details the saga of Louis Zamperini, who survived a
bomber crash in the Pacific in World War II and spent two and a half
years as a prisoner of war.

For the summer issue of Stanford Medicine magazine, a special on
well-being, I was curious what the word "well" meant to someone who
has been unwell for so long – so I reached out to the author. In the
conversation that followed, she graphically detailed how she was
ravaged by the disease and how – after being stricken in 1987 – her
symptoms at times were so severe that for two years she was
incapacitated and house-ridden. She told me she has made a lot of
recent changes in her medical treatments and in her life; she has
pushed a lot of boundaries such as moving across country to Oregon to
be with her boyfriend.

I sensed that Hillenbrand has uncovered a range of newfound strengths
and is trying to leave her frailty behind. While she knows she can
never escape her chronic illness, there is a sense of optimism and
wonderment in her voice over her new beginnings.

As we ended our conversation I couldn't help but ask about a new book.
She says she's not ready to disclose the topic yet, but it will be "a
whole lot of fun."

Hopefully, readers who have loved her work will relish this 1:2:1
podcast for her startling frankness about how she achieved great
writing success while besieged by a mysterious illness. For others who
don't know Hillenbrand's writings or her personal story, I hope
they'll be in awe – as I am – that she did such excellent work while
smothered in pain and darkness.

Thursday, August 18, 2016

Hillary's stance on Disability

The thought of considering Clinton felt hypocritical of me.  I told myself, "How can I support someone who probably cares more about Wall Street than me?"  But I certainly couldn't consider Donald Trump, who mocks disabled people and assumes we're stupid enough to think that's not what he was doing.  So, begrudgingly, I told a Hillary supporter with a disability that I was now considering supporting Hillary. He immediately introduced me via email to a blind Clinton staffer. Within literally minutes, she emailed me at 9 p.m. saying she would like to speak to me about the campaign. I was so encouraged by how quickly they responded, after the months I was ignored by Bernie.
She didn't treat me like a nuisance like the Bernie campaign did but rather an asset.  She wanted to know my legal and advocacy opinion on disability policy.  She explained in detail how Hillary planned to initiate change for us with sophisticated, legal political strategy.  And, then she asked me to come on board and help the campaign best meet the needs of the disability community ...  I soon realized that the Clinton campaign didn’t just care about the disability community; they hired us and treated us like the intelligent people we are. 

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